Sunday, 27 February 2011

Saying goodbye.

I hate the finality of that title, but that's what I did. In truth, I prefer the saying 'It's not goodbye, but simply 'I'll see you soon'', cause no one really knows what actually happens. They're partying like rockstars up there, and you just live your life, in wait for your VIP ticket.

I lit a candle on Thursday for Lauren, as it was her funeral, and obviously I couldn't go. Turns out the candle was scented AND changed colours. Damn cool. I got upset after I'd blown out the candle as it just felt so final, and almost a bit more real. This will take time, and I understand that. I read this Winnie the Pooh quote last night that definitely sums everything up perfectly:

"How lucky I am to have something that makes saying goodbye so hard."

I have so much love for everyone who has been there for me and helped me through this. All the messages, chats, texts and hugs mean so much. And a lot more love for Gem who knew and loved Lauren just as much and is going through the exact same thing, but has been there every second

I'm feeling a lot better than I was pre-IVs so it looks like they've worked! I'm still coughing a lot but what can you do? Nothing really shifts my cough now a days so I've just learnt to deal. Even if it's incredibly annoying. I at least had the energy to go out for drinks for a few hours with people from college for someone's birthday on Friday. Luckily I actually got a lift with a couple of others to the pub we went to as I definitely wouldn't have been able to walk there from college with my lungs and my boots! And I actually wore a dress which I don't do often, haha. Have to admit though, I did love the compliments!

If you haven't seen it yet, I suggest you check out Kirsty's blog which is an incredibly inspiring read of her road to transplant and coping with CF.

Annnnnnd Jenni sent me post :D It was apparently the 'fastest snail mail ever' as it was sent the other evening and I got it the next morning. to quote Jenni, it was one bloody fast snail. That never happens! I get a bit giddy when I get something in the post that isn't crap from college/clinic/the bank. 

This was a bit of a random mix of a blog! Hope everyone's okay :)

Sunday, 20 February 2011

Some pictures and life over the last week.

I feel like I've scared everyone off?! Y'know I just don't feel like many people read my scribbles any more. I mean, this is hardly commonly read blog or anything and it was always started just for myself, to write about stuff. My memory is so bad, so it's handy having this, I can check back and remember 'oh, that happened' rather than having the memory disappear forever in the empty chasm that is my mind!

But yeah. Like I said, this is my blog, so whether or not people read, I'll continue to write. I'll admit this has been the hardest week in a long time. Health stuff (I'll update on how clinic went later) and college stuff aside (even though right now, it's not too bad, dare I say, I'm enjoying it?!) Loosing Lauren is difficult to an extent that I could never have imagined. I've lost friends before, to CF and the like, but no one I was this close to. And it hurts. Lauren herself said she wasn't scared of dying, more, the weeks/days leading up to it, and leaving her family behind (which is precisely what I'm scared about too, just FYI). A few people have told me that she wouldn't have been in pain, and I know they'd have given her plenty of morphine so it's a comfort to know she would have just... drifted off I guess, rather than struggle through the last moments.

I guess there's a few dark thoughts in my head but I can't stop them really. But I feel like I should be honest. I haven't spoken to many people. I feel like one moment I need to be around friends, and they hug me and tell me it'll get easier, and then the next I just want to be on my own so I can pretty much just loose it without people fussing. Except the being on my own part is difficult - that involves walking to somewhere, and it's bitterly cold outside still, and my lungs just don't agree with long treks like they used to. So I'm a bit stuck. It'd be nice to be able to drive at moments like this. Just get in the car, drive to a quiet place and just... think.

It's like on Thursday. I got out the house for a bit, I needed distraction. I ended up crying on my friends shoulder for ages. But we just talked, and he hugged me, and that helped. Then some other friends came looking for us, saw I'd been crying and were asking me what was up. I couldn't handle that, being surrounded. I went off with my cousin and we sat and talked for ages. It felt nice to smile, and laugh a bit. Even if it does feel incredibly conflicting to be crying so hard one minute and the next people are making you giggle.

Okay I promise I'll try and be less mopey. I feel like Loz wouldn't want me to just sit around, sad all the time.

Clinic was a bit frustrating on Monday. My lung function dropped from 75% last month, to 50% at this appointment. My weight dropped still, and my sats were 92%. Lovely. I told my physio (cos my dr doesn't listen for shit) about how exhausted I was. I could bearly make it up stairs, I cannot walk up the stairs at college no matter how much you ask me, so I have to resort to the lift, in the weeks running up to clinic I'd been coughing so badly, non stop, had headaches and pain from it, increased lung pain in general, hemos, and temps. And when my dad dropped me off at the front door of the hospital, it's about a 100ft max walk to clinic. It wore me out so much I was close to tears, and I'd not even walked half of it at that point. To be honest it's a whole medical list that was getting a bit too much in a short amount of time that I'm just not used to.

So my physio left. My dr came in, skimmed over my results, and erm, yeah pretty much just walked out. I was getting so frustrated, almost yelled at him, saying how I felt like utter shit and they're not doing a thing. He just pointed at my drip stand and said 'we're starting on IVs aren't we'. And that made me more angry. Cos one of the drugs, Tazocin, is one I've never had before, and I'm honest-to-god terrified of side effects and reactions. Not every hospital will keep you in when starting a new drug, but even then, a few will at least give you an epi pen or antihistamines or something, just in case. My hospital? Nothing. Not a thing. I pointed out, probably about 10 times, that I'm worried about reactions and he just said 'well you won't react'. I mean, WTF! In the past, I've reacted to things, Like meropennum. It completely knocked me for 6, and when we phoned the dr up, he just said 'thats the IVs at work'. No shit. But not working in a way we wanted.

In the wise words of Gem, he's such a penis. 

It didn't help that they randomly took blood for an annual review I didn't know I was going to get. (Not that blood takes bother me, it was the fact that I didn't know a thing about it till the nurse walked in with several vials and a butterfly needle). And that he didn't tell me that I was going to get a chest xray for my next appointment for the review, until I read the 'next appointment' slip thing saying I needed to arrive 30 minutes earlier and head straight to xray. I promise to take a photo of the ever so sexy gown they force me to wear for that.

I'll admit, I've been on the drug a week and still survived, but reactions can happen at any time, so I'm still a tidgy bit scared, and will continue to be for the next week until I finish the IVs. My nurse came in for a chat too, whilst I was stuck in the room for 3 hours. She noticed I was down. Mainly it's the no energy thing. I just kept repeating that I'm too tired for everything; I was dreading the walk back to the bus stop, even though it wouldn't be as difficult as it could be as it was down hill. Me and my stubborn-ness to go to clinic on my own means getting dropped off by my dad, and getting the bus home. It was nice to talk and get a hug, but she was also saying things like it's partly my mindset which is making me, and keeping me feeling down. It did frustrate me a bit, cos she was basically implying that I could feel a bit better if I smiled more and thought more positively. I can do that. Just not when I'm feeling this crap. I needed a break that no one wanted to give me.

On a brighter note, I am feeling better. I can at least go up the stairs and be knackered at the top rather than on the landing bit half way up. With a week to go, I'm really hoping I get back to myself soon.  Now here's some photos cos I don't like to go too long without photos all over the blog :)

 Triple exposure taken on film, 120mm with my holga camera. This is my submission for the senses project. It's the one decent picture I got, and I'm pretty happy with it.

 My eflow :) I just put saline through it so I wasn't wasting any drugs or HTS, and took some photos of the cool misty effect. I might actually use it to create more atmosphere in photos now.. :D Cheaper than a smoke machine

 Stuck in a room for 3 hours, and the only thing to take photos of was the drip of colistin. Fun times..

 And me with the drip stand. With a war wound on my arm where they took several pints of blood for my annual review in a couple of weeks. Frankly, I'm incredibly curious to what my various levels are whilst feeling like I've been thoroughly put through the mill. I didn't drip stand skate much even though I was acquainted with it for 3 hours; I just lacked the energy and sat texting instead.

Old ish photo from around last June I think. But it never fails to make me laugh. I absolutely love random things like this and wish I saw more to take photos of.

Hope everyone's okay? xx

Thursday, 17 February 2011

Breathe easy beautiful girly.

This is the hardest thing I've ever had to write. I even considered not writing at all, in the hope that it's not real. That it's just some bad dream I'll wake up from.

But I've tried to wake up and I just can't.

Lauren was just 19, and passed away from Cystic Fibrosis yesterday.

I will always consider you one of my best CF friends. Cos even though we never met, I love you just as much as I do with those who I see every day. We talked mostly through email. Cos you emailed me more than a year and a half ago saying you'd read my blog for a while and finally decided to email me as you said I seemed like someone you'd be friends with back home, and it'd be cool to talk to another person with CF, even though we never just talked about CF stuff. So we talked a lot, emails and cards back and forth. We helped each other through problems and bitched about stuff, made each other laugh.

One of the last cards I sent a couple of months ago, whilst you were still in hospital, had that toy story song written in. I love the song and it just seemed... apt, I guess is the word.

Some other friends might be
a little smarter than I am
bigger and stronger, too
but none of them will ever love you
the way I do
it's me and you
and as the years go by
boy, our friendship will never die
you're gonna see, it's our destiny
you've got a friend in me

We also got our first ever moonpig cards off each other which is pretty cool. Mine was another get well soon card whilst you were in Southampton, and you said it made you smile so much. It was the least I could do. I felt so helpless being so far away. You sent me mine for my birthday. It's still on my wall. And that's where it's staying.

I can't explain how unfair this is. How bad it hurts. I've lost friends before, but no one I was this close to. The pain is enough to tear you apart. But I'd never take away the friendship we had in order to not feel like this. We knew you weren't well. But I guess I was in denial. Constantly worrying, being scared, but all along thinking, you'll be okay, you'll pull through.

Breathe easy. My only consolation is that you're no longer struggling, in pain. And you're with those who've already left us before. Dancing with the stars, without pain or breathlessness to hinder you any more.

And that's all I can write for now

P.s. As I'm making it a yearly thing to do the CF zipslide in Newcastle, and I've already decided I'm doing this years zipslide too (In October, off the baltic centre for art) and I've decided to dedicate it to your memory. I can't believe we'll never email or send cards to and fro again. But I can do this for you xxxxx

RIP 04/12/91 - 16/02/11

Saturday, 12 February 2011

Simple things.

Okay, getting tired of whining. Seriously. So... I'm making a post about everything that's made me smile recently.

  • Our aherm... rather lovely model for one of the projects. Texting Gem kept me nicely occupied. And the fact that the photos turned out really well, is a massive bonus. 
  • The equally lovely boxer I was paying more attention to rather than helping a friend on a shoot. In fairness, there wasn't much for me to do. Except admire his muscles. So I wasn't complaining (Till he left, but you can't have it all...)
  • The cards I get off Gem in the post. I don't really need to elaborate on that, b/c they're just all around awesome. And random texts that make each other laugh out loud in public and get weird looks...
  • Nights out I've had with friends in the past couple of months. I'm way too exhausted recently to go out but I've had some pretty good times that I'm not forgetting in a hurry.
  • When people prove they care. You know how easy it is to just get forgotten about just b/c you're ill all the time - the novelty runs out and no one gives a shit. Sort of like when you're in hospital all the time and no one bothers to visit anymore. Cept I'm never admitted so it's more when people actually give a shit and keep in contact, prove they haven't forgotten about you and everything. I hate how lonely it is feeling shit all the time and the isolation you feel. So even just getting a hug means a hell of a lot some days.
  • Photoshoots. Obviously, I love them. 
  • Laughing fits that last forever
  • Inboxes on facebook. Can't explain that one really, I just love them
  • Oh and when friends write wall posts that are complete bollocks only you understand :D
  • My holga camera. It's taking some trial and error with film issues (aka, first one turning out mostly blank) but I'm determined to get a good set of images which I'll love unconditionally.
  • Tea.
  • ^^^ and lots of it.
  • Hugs off my Mum. B/c those you can't beat.
  • Driving... when it goes well. It's been 8 months, surely I'll crack it soon?! 
  • Photo mishes with my Dad
  • I have a bigger room :D
  • The fact that I'm going to see The Script in March :D
Haha okay as random as that was, I loved writing it. Sometimes when you're just pissed off with everything, that's all you need. That, and an exceedingly large cup of tea.

Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...